Below is a statement by NUAA on the My Health Record — a new initiative by the federal government to create an online summary of your health data. A range of groups and experts have raised serious concerns about privacy and security of the data. Everyone will get the chance to opt-out over until the new deadline of January 31 (extended by the government after widespread community concern). You can opt out online here (or see bottom of the statement for how to do it by phone or paper). At this stage, NUAA recommends if you have concerns, to opt out.
Please read the statement for more information, check out a collection of articles or get in touch at firstname.lastname@example.org or phone (02) 8354-7300 or free call 1800 644 413 if you have any questions. We will be supporting community members to opt out when more information is available on the process.
What is the My Health Record?
The My Health Record is an online summary of your personal health information. The record will include:
- Prescriptions dispensed
- Test or scan results
- Medical conditions and treatment
It will NOT include clinical notes. It will include up to two years of Medicare data. Tests and scans that took place prior to the record being created will not be added. Tests and scans that take place after the record has been created will be added.
You will be able to add personal health summaries, allergy information, care plan information, Indigenous status information and other personal information you choose to share.
What are the risks of My Health Record?
Once a My Health Record has been created, it will be available for government agencies to access, you cannot de-register but only de-activate the record. The health information can be disclosed to a range of parties other than you, your representative and your doctor including operators of the IT system supporting the record and their contractors. The information can also be disclosed for law enforcement purposes. If a health care worker is of the opinion that there is a serious threat to an individual’s life, health or safety or they believe disclosure is necessary to prevent a serious threat to public health or safety, they can disclose information in your My Health Record.
The provisions in the My Health Record act are very broad and there are a number of circumstances where your health information can be shared with other people or agencies, including law enforcement or community services. The circumstances under which your data can be disclosed are very widely defined.
What is the benefit of My Health Record?
The My Health Record will allow medical professionals full access to your health information. This information may benefit you by improving your care and support greater coordination of care. It may reduce duplication of tests and benefit the health system as a whole.
What are the risks of My Health Record for people who use drugs or who have had hepatitis C?
A broad range of health care professionals will be able to access your health information including prescriptions and pathology results. The reality for many people who use drugs is that they experience high levels of stigma once our history of drug use, treatment for issues with drug use or exposure to hepatitis C is known. Many of us cannot access adequate pain relief or experience discrimination based on drug use or hepatitis C status. The My Health Record will make this information more accessible to a very broad range of health care providers including dentists, pharmacists and hospitals. The reality is that many in our community are denied health care based on our drug use and this record has the potential to increase our experience of stigma and discrimination.
The other risk of the My Health Record is that should this information be requested by law enforcement, it will be held in one repository. If you have a positive drug screen at any facility, this information will be easily accessible.
What is NUAA’s recommendation?
We recommend that at this stage, if you have any concerns about the above, you opt out.
How do I opt out?
You will have three months to opt out, from the 16th of July to the 15th of October, 2018 (EDIT: Since extended until January 31). NUAA will support the community to opt out during the opting out period. There are three ways to opt out:
- By visiting www.myhealthrecord.gov.au and opting out using the online portal.
- Over the phone by calling 1800 723 471.
- Or on paper by completing a form and returning it by mail. Forms will be available in 2,385 rural and remote Australia Post outlets, through 146 Aboriginal Community Controlled Health Organisations and in 136 prisons.